Trauma and Isolation

Do you ever feel alone around people? I remember this strange sense of isolation when I returned to school the summer after my open-heart surgery when I was 14. Something in me changed. I feel this again. I thought I was fine during my time off work. I kept myself busy. Although, I was by myself most of the time I kind of liked it. I enjoyed writing and doing the things I wanted to do. There were times I wish my friends would make the effort and see me but, the thought didn’t overwhelm me. This week has been my first week back to work since my surgery and I remembered that feeling I had when I was fourteen. It was that feeling of isolation again.

How is this possible? It was the flooding of people asking me and telling me that I look great and asking me in passing how I’m doing, expecting me to say “great” because I’m back and what else would I say. When I say “well, I’m still hurting” or something of the same I get in return “well, glad your back” or “well it will take some time.”  I guess I’m being too hard. But it all feels so insincere and it seriously makes me feel so alone. I would rather someone not even acknowledge it, then make small talk about my illness. Because it’s not small talk to me. Invisible illness is funny like that. When you can’t see my scar. You can’t see what I’ve gone through. It’s forgotten, the pain, the trauma that I’ve been through. When I’m alone I can deal with it. But when I must go through the whole day masking, then on top of it being reminded of trauma and having to gloss over details so I can answer to my co-workers that I’m doing great! Well, I remember why that fourteen-year-old girl stopped talking about her feelings, I remember why she held all her pain inside and then took it out in unhealthy ways. I remember how isolated I was and how isolated I feel now.

The Mightiest

I got my “The Mighty” sweater about a week ago. I’m so excited and honored to a community leader on the site. I’ve been a member of The Mighty Site for many years now and seen it grow. There are so many resources on the site to help those with mental and chronic illnesses. I especially love the articles. The discussion boards are extremely helpful as well. It’s a community where we all discuss and help each other out. If you haven’t visited The Mighty Site I strongly recommend checking it out. I’ve got some great opportunities to write some articles on the site and I’m always there to welcome new members and just to say hi 👋🏻
https://themighty.com/u/amelia-blackwater/

What the 10-year photo challenge means when you are chronically ill

Here it is, the newest photo challenge to ring in the new decade. While most are comparing their younger selves to how they look now, maybe even celebrating body transformations, the 10-year photo challenge means an entirely different thing to someone who has chronic illness.

10 years ago, I had energy, I was in college full time and working. But chronic Illness has stolen many years from me. When others were out getting their graduate degrees, moving out, having kids and owning their own home, things that “society” expects of you in your mid to late-twenties, I was stuck. Although, I was born with a Congenital Heart defect called Transposition of the Great Arteries somehow, I no longer had the energy I had before. It was as if I hit 25 and I became an old woman. During the summer before I turned 26, I had to go off my Mom’s insurance and everything changed. I had insurance but the doctors I had just didn’t listen to me when I said I knew something was wrong. That I shouldn’t feel this bad all the time. It took five years, and a change of insurance before I got my answer. I had my third open heart surgery in August to remove a PA band that had been put on 15 years ago when they were discussing the option of switching my arteries.

I celebrated my 31st birthday in September, thankful to be alive, but at a price. When I look at the girl ten years ago, part of me is jealous and part of me wishes I could go back in time and get those years back. Make the doctors and insurance companies listen to me, tell them what is wrong and maybe get those years back. But I can’t and I’m not that girl anymore. I don’t have to be thankful for those years, but I can move on and I can look forward to gaining energy and strength in my 30’s.

While I was trying to create this 10-year photo challenge it meant trying to find that perfect photo that I’m not laying in bed, it meant finding that one occasion that I had energy to put on make up and look and feel beautiful. I could’ve chosen a photo on one of those occasions when I got all dressed up but it’s not true to who I am and the truth of my life currently. So, I took a photo from my bed today and marked the next ten years to come.

How do you feel about the 10-year photo challenge?

Strive for Progress Not Perfection

Strive for progress not perfection. 

It’s a hard one to follow when we feel like the world is pushing us to be perfect. We are surrounded by society telling us how we should model our bodies, our homes, what we should or shouldn’t buy. That we won’t be happy till we are perfect. 

Here’s the thing, I have wasted so much of my life trying to become this unattainable perfect person. It’s cause me my health trying to achieve society’s expectations of the perfect body. So I tried to control my food intake relying on what I saw in magazines and the internet. Magazines would scream on the headlines “get the perfect body.” So I mixed in with other trauma during my teens and the society that surrounded me it was a perfect cocktail for me to develop an eating disorder.

Becoming perfect has also affected me by that feeling of “keeping up with the Jones’s.” That the next new trend of clothing, technology, etc is somehow going to make me happy. That if I keep up with these trends then I be perfect. But to keep up with these trends is costly and has caused me to go into debt in search for this so called perfection in these ads.

So this is what I’ve learned, being perfect isn’t the answer. It doesn’t make you happy and it’s not possible. Seriously, it’s not possible to be perfect. Those ads, the things that you see on instagram it’s either fake or it’s just 20% of someone’s life. Just what someone decides to show you. They aren’t perfect. No one is. So stop trying to achieve it. 

Instead, strive for progress. How is that different you ask? You aren’t comparing your life to someone else’s. You are bettering yourself on your terms in healthy ways. 

How would you strive for progress?

Perfectionism


At its root perfectionism isn’t really about a deep love of being meticulous. It’s about fear. Fear of making a mistake. Fear of disappointing others. Fear of failure. Fear of success.  – Michael Law

I’ve talked a lot about my OCD but not so much about perfectionism. There are two different types of perfectionism and then there is OCD. In a sense perfectionism can hold you back just as much as having OCD. According to an article in Harvard Business Review by Thomas Curran and Andrew P. Hill, there was a study done on 41,641 American, Canadian, and British college students on their level of perfectionism. There findings supported that between 1989 and 2016, college students’ levels of self-oriented, socially prescribed, and other-oriented perfectionism has increased by statistically significant amounts. “Recent generations of young people are more demanding of themselves, perceive that others are more demanding of them, and are more demanding of others.”

The first of the two different types of perfectionism is Adaptive/Healthy Perfectionism. This is usually what most people think when hear perfectionist. It’s the person who has high standards for everything, persists no matter what life throws at them, is goal driven, and has perfect organizational skills. This type of perfectionism that is usually portrayed in media. The “neat freak,” the person who seems to have it all together. Who has that perfect insta feed that we “strive for.”

Maladaptive/Unhealthy Perfectionism is the preoccupation with past and future mistakes and fears. They constantly have doubts that they are always doing something the incorrect way. Maladaptive Perfectionist are heavily invested in the expectations of others around them and what others would think of them. They also possess the need for control and often react negatively when their environment does not react the way they planned. For example, those who have control issues might also have disorders such as OCD or suffer from restrictive eating or other eating disorders.

OCD, is the fear that if something isn’t just right, you don’t complete your compulsions the correct way or exactly the “right way” and that in response to that your fear or intrusive thought will happen. These fears can differ from the type of compulsion or obsession. For example, the person must lock the door three times before they go to bed or the whole family will be killed and it will be because they didn’t complete their ritual.

I’ve always suffered from both OCD and Maladaptive perfectionism. It has held me back it many ways. I don’t want to start an art project if I feel like it won’t be perfect. I don’t want to go back to school scared of failing. I’ve always needed a sense of control in my life. Recently I got a bullet journal hoping to organize things and make it beautiful. I watched videos I did everything but after it, I just stared at the blank journal scared of making a mistake. So it’s sat on my table.

Blank.

My goal this week is to get out of my head and stop letting my fears of perfectionist dictate my life. Starting with the little things like my bullet journal 

Are you a perfectionist? If so what kind? How has it affected your life?

Sources

AN EXPLORATION OF ADAPTIVE AND MALADAPTIVE PERFECTIONISM AS IT RELATES TO INTIMATE RELATIONSHIPS

Perfectionism Is Increasing, and That’s Not Good News

Two Months Post-Op

Yesterday marked two months since my surgery. There are so many things I’m grateful for. These past two months have been spent with a whole lot of healing. The first month was rough. I barely had any independence. I couldn’t take a shower by myself. I couldn’t walk upstairs without telling someone. I couldn’t be left alone in the house. It was exacerbated by the fact that I fainted on my birthday in September, which made my family very hesitant about leaving me alone.

This second month I’m seeing little changes. I have more independence, I’m able to be by myself now, shower, etc. I haven’t had any other fainting spells since September which we think was just a low blood pressure thing that happened. I go upstairs every day where our living room is and keep myself busy. I’ve cleaned out and organized my closet, cleaned my house several times, I keep busy with my online etsy business, and of course writing on instagram on my blog! I also try to walk everyday as well to get my strength up.

The other day I spent the whole day baking. Which might seem like a silly milestone but it was something I used to do, but for awhile I couldn’t bake due to all the energy it took out of me. So the other day I kept on saying I was going to bake cookies and I kept puting it off all week because I was scared of off the energy it was going to take out of me. Plus everyone in my house wanted different kinds of cookies which meant cooking all day.

I finally decided I was going to bake. I baked all day! I baked from 10am till 6pm. My parents had their oatmeal cookies, I made my husband some chocolate chip cookies and then some cookies with both peanut butter and chocolate chips. I even made myself some gluten free cookies. They were freakin delicious to say the least.

I still have a lot of healing to go but I’m so thankful to my doctor and my surgeon for taking care of me. Before my surgery I could barely go to work anymore. I could barely function day to day. I was so fatigued that I couldn’t get through the day. To be honest I didn’t think I was going to make it through this one guys. I’m here though, and I made a crap ton of cookies with all the energy I had. 🍪🍪🍪

Invisible Illness – What is hidden underneath


When you have an invisible disability it’s hard for anyone to truly get what is going on. If you look normal, you must therefore be normal and feel normal.

Having an invisible disability invites look of disgust and stares while you walk from the store to your car parked in the handicap place. It invites comments from friends, family, and even doctors who say, “well, you look great.” While your pain is at a level 10.
Which means we deal with stigma from doctors to get the care we need just because we “look okay.”
There are so many who suffer from unseen illnesses yet, I here uneducated/insensitive comments everyday. We are seen as fakers and attention seekers by those who choose only to look at the surface.

Despite all of it, We are the invisible warriors. We literally fight invisible battles with our bodies every day. It’s like a superpower that no one ever wanted. But we do it to stay alive.

Remember when you see someone who gets out of a wheelchair, who looks fine getting out of their car from that handicap space, that misses work for no reason, that you don’t know all their story. You maybe don’t even know 40%, don’t ever assume. 💙
Stay strong my invisible warriors. 

Life on Pause, Moving On

Are you ever afraid of moving forward in your life? Living with chronic illnesses or being born with a congenital defect can weigh on your life it many ways. It can make you pause your life for your health for many years if not forever. Although, was born with a congenital heart defect my life has been in limbo I’ve felt since I was a teenager. Was I going to have the switch done (switching back my arteries to where they are supposed to be and taking down my senning procedure) or was I just going to stay like this till heart failure? When was that going to happen? How long was I going to last. When they put the PA band on pulmonary artery when I was in high school, I was never the same person. I changed.

When I finished college, it was like my body knew it had been waiting for a pause. A chance to falter while no one was really paying close attention. It was slow, then sudden; I knew something was wrong. And my life continued to be on pause. A sort of stalemate between my body and the life I wanted to so desperately live. Because of this we went into debt grasping for any chance of life I could experience and get. Living beyond my husband’s and I’s means for awhile. You know when you just have this bad feeling that you aren’t sure you are going to make it out alive this time.

I had so many ideas and dreams that I wanted to do. There were so many conversations that I had with people telling them nicely that I had plans to go back to school, I only had to pass the cbest math, I just had to go back to school to get my credential. I just didn’t know how to tell them that I had health problems that prevented me and I didn’t want it to become an excuse either.

Moving On, living with a chronic illness I know my life will never be normal. This recent surgery I know has helped me with my fatigue. I know I can do more. It’s the holding myself accountable that’s freaking terrifying. We’ve been lucky to be able to get our debt in check. But I’m so terrified of not having my life on pause that I don’t know what to do now with my life. I know want to have a spectacular life. I want to change people’s life. There is always that fear in the back of my mind that I will not pass something like an arbitrary math test or get into grad school and I will forever be this person who will be telling everyone that “yes, I’m working on trying to go back to school but I just have to…” and I will be letting everyone down including myself.

In all honesty, I’m tired of my life being on pause, of being afraid of failure, of waiting for a future that won’t come unless I work for it. I know my health will always get in the way. But I currently have one less hurdle to jump through. So here’s to less health hurdles and more playing the game of life.

Sending love to all warriors,

Amelia Blackwater

old posts, new posts, and something in between

For those of you who follow me on instagram and facebook you might be seeing some familiar post spring up here. I’m going to be backdating some old instagram posts onto the wordpress blog as well as continue to post the content from instagram onto the blog. However, the post that I will have on the blog might sometimes be a bit different then what I post on instagram. Meaning they might be longer and more in depth. Check out tomorrow’s post. There will be little differences throughout the post. I had to cut some things out of the instagram one just due to the lengthiness of the post. Believe me I know I loss an audience once a post gets into the comments section on instagram. I will have other content on here as well. Please make sure to follow me on facebook, instagram, youtube, and patreon. I try to post unique content to each media site so you do get bored.

I posted some questions on instagram to get a feel of the kind of content everyone is enjoying. Feel free to comment on what you would like to see more of, chronic illness, mental health, art, poetry, or a mix of all the above?

Much love warriors,

Amelia Blackwater

Ways of Dealing with Pain

Trying to work through a headache slowly turning into a migraine. I’ve always have this thing about living with headaches, I might as well do something because either way I’m going to be in pain. At least if I’m doing something I’ll get my mind off of it. It’s always been the way I fight through any type of pain, whether it’s a headache that turns into a migraine, chest pain, pelvic pain, etc. It’s something that has caused a lot of issues due to people assuming I must not be in that much pain if I can do “insert activity here.” Here’s the thing, I just deal with pain differently, it doesn’t mean I’m in less pain then what I’m describing.

Beware when you call people fakers, when you see them do things despite their pain. We all have our ways of dealing with pain. Don’t let your perception stigmatize someone.